AIDS Taught Me Sex Was Deadly. A Pill Changed That.

November 29, 2016

In late 2014 I received an email from one of New York City’s largest sex parties for gay men. Usually, the email would have contained this: a time, an address, a dress code, the price. The party had long been condoms-only, but a new safe-sex provision had just been added: “If you do have condomless sex it is assumed that you are on PrEP/Truvada or undetectable.”

I wouldn’t have noticed this email if it hadn’t been for a response from New York’s one remaining condom-only party. This wasn’t an invitation but a statement of policy, an email unlike any sent previously or since. Safe sex is an important project, it argued, and condoms are the only way to be safe. The second party remains condoms-only, and is still alone in this decision. It feels now like a holdover from a different time.

My generation of gay men came after the plague but before the pill. What I knew was that fifty thousand people died in the U.S. in 1995. I was thirteen. What I knew was that sex kills, that no pleasure is ever free of worry, of death. The first thing I learned about sex was Kaposi’s sarcoma lesions, gaunt thirty-two-year-olds on TV. I became a gay man and a scientist with a background in microbiology and biochemistry. Viruses have always fascinated me for being so complex and yet so simple, for being so deadly with so few genes.

But HIV didn’t just kill bodies. It killed a type of sex as well, a type of pleasure. It erased the possibility of my body and another meeting, one moment, without my mortality there too, watching. Sex is this: another body, my body, my mortality, all naked for me to see. I knew about HIV and death before I knew I was gay. I knew about death then, and that being gay might be deadly, and now I sleep with men.

HIV has never left me. I’m nostalgic for the pre-HIV era I never knew. Our image of those years is ambivalent: You could give head in abandoned buildings by the piers, but anything like a relationship seemed impossible to so many, the notion of gay marriage laughable. Gay people weren’t often permitted relationships in a world so threatened by our bodies and how we use them. Now we can get married, but — thanks to HIV — we’ve lost the notion of pleasure without worry. I worry. I only have unprotected sex when in a monogamous relationship. Even then, who knows? Everyone cheats, even straight people.

Those who lived through or were born into the 1980s became a generation afraid of love and the sex it would bring. The writer Hilton Als, referencing the garbage bags that early AIDS victims were stuffed inside, wrote, “I did not say I loved him….If I did, wouldn’t that end up in a garbage bag, too?” Even after HIV became less of a death sentence, I always viewed it fatalistically. Being positive would make it harder — I always felt — to find love and trust and sex. I had reservations about dating someone who was HIV-positive; I knew that if I were positive others would have the same reservations about me. If there were a pill for my worry, I would take it, a cure not for an infection of the body but for the traumatized mind. I would take this pill now, and I would never stop.

Some definitions:MSM: men who have sex with men, a term devoid of political or social overtones (unlike, say, “gay” or “queer”). MSM are the community most at risk for new HIV infection. PrEP: pre-exposure prophylaxis. PrEP is a pill taken by HIV-negative people to maintain their status. Truvada: The one pill approved for PrEP. It has been used as a component of HIV therapy since 2004, but was only approved for PrEP in the HIV-negative in 2012. In this article, “Truvada” refers to the drug used specifically by those who are HIV-negative, a shorthand that is almost universal in New York’s gay community. Undetectable: An undetectable person is HIV-positive but controlling their infection with antiretrovirals. New research shows that their likelihood of communicating the virus is essentially zero.

Truvada came on the market four years ago, in 2012, but prescriptions didn’t start taking off until early 2014. Gilead Sciences, the company that makes and sells Truvada, reported earlier this year that eighty thousand to ninety thousand people were on PrEP. Twelve and a half thousand people in New York State have filled prescriptions, the overwhelming majority in the city. The number of individuals starting PrEP has increased exponentially, rising fivefold in two years, from the end of 2013 to the end of 2015. A survey by New York City’s Department of Health estimates that 29 percent of MSM ages eighteen to forty in the city are already on PrEP.

For one week, those numbers included me. I wasn’t having sex with a stranger. I was having sex with my ex. He’d been in and out of my life after he’d gone away for a month and I’d found evidence he was cheating. A part of me had always known.

We’d been having unprotected sex for a year. I’ve always had unprotected sex with my boyfriends, a sign that we cared for each other, that we had built something like trust. I insisted on couples trips to the free clinic after three months of monogamy. I loved this man in part because his sex seemed so free, so out of my control. I begged him not to put me at risk. I told him my body was in his hands. He looked me in the eye and said I could trust him. I did trust him. After I caught him cheating, we used condoms. I got tested. He said that he never had raw sex with anyone but me, that it was an intimacy I alone had earned. I believed he was telling the truth. I trusted that he only cheated safely.

My ex wanted another chance. He wanted to have raw sex again. So one of us — I don’t remember who — suggested PrEP. This was in 2014, when hardly anyone knew about Truvada. PrEP and undetectable were not yet listed as safe-sex options in hookup apps. Gay activists still called it a poison, a party drug. This pill offered the promise of bringing us back together. Truvada was more certain than his word.

We both started swallowing that big, blue pill once a day.

A week later, without touching him much at all, I was on my way out of his life. PrEP made space for me to consider raw sex with him again, but I realized that it wasn’t HIV that made him unsafe. Maybe for the first time in my life, I wasn’t afraid of HIV. I was afraid of him. There was no cure for the damage we had done to each other. So I left, and I tried to stay gone.

Truvada is not one drug but two: emtricitabine and tenofovir disoproxil fumarate. HIV pills contain multiple (usually three) antiretroviral drugs. This is because HIV mutates rapidly to become resistant to any one therapy. The likelihood of a single virus simultaneously acquiring resistance to two or three drugs is the product of the individual probabilities, a number that approaches zero without ever reaching it.

People at high risk for HIV infection — sex workers, MSM, those with multiple partners — can take Truvada and have unprotected sex with little risk of contracting HIV. There is a 96 percent reduction in HIV transmission for those who take the drug four times a week. For daily use, the reduction is 99 percent. In one key study, none of the participants contracted HIV. Another option — post-exposure prophylaxis, or PEP — can be taken after a broken condom or risky sex. These drugs stop the virus from replicating before it manages to find and infect T cells. The virus never becomes a part of us.

In preventing the transmission of HIV, PrEP is at least as effective as condoms. Condoms reduce the risk of HIV transmission through anal sex by 70 percent with consistent and proper use. For men who don’t use condoms consistently — and according to studies, most men don’t — the difference in rates of HIV transmission between sex with and without condoms is not statistically significant.

Those who remain HIV-negative while on PrEP will have antiretroviral medicine consistently in their bloodstream and no virus in their blood. Undetectable people have antiretroviral medicine in their bloodstream and no virus in their blood. In terms of HIV transmission, there is no reasonable distinction between those who are HIV-negative and on PrEP and those who are HIV-positive and undetectable.

For many years there was a respectability politics of condoms. Truvada was vociferously opposed by traditional gay health organizations. Michael Weinstein, the head of the AIDS Healthcare Foundation, continues to campaign against it. The opposition to Truvada seems to have made Gilead cautious about marketing it. Though the drug has been available for four years, Gilead has started to underwrite advertising only in the past few weeks. Paranoia about PrEP remains, often driven by the idea that other infections (chlamydia, syphilis) will rise without condom use. Bacterial STIs did increase in 2015, though it’s impossible to connect that increase to Truvada. In effect, much of the rhetoric about STIs continues a long history of pathologizing gay sex, particularly raw gay sex, now that we can no longer rely on HIV alone.

When single, I use condoms consistently. I believed this: Responsible, self-loving, caring, good gay men use them, always. I wanted to be that type of man. I was shocked, talking to my straight friends, to learn that they had unprotected casual sex. Gay men were considered unsanitary even before HIV. Our vice president–elect thinks us unfit to work because of our diseased bodies. We have to constantly prove to the world that we aren’t, in fact, sexual monsters, deviants. Straight people don’t carry the same burden of politics, the same history of HIV, into the bedroom.

In the era of HIV activism, gay sex was central to the conversation. HIV was a sexually transmitted disease; how we fucked was how we lived or died. In the fight for gay marriage, we willingly hid our sex. An ex-partner of mine worked at GLAAD, where he trained people to say “gay” and not “homosexual,” because the latter puts the word sex in people’s faces. The fight would be easier if people didn’t imagine the icky things we do in the dark. We won the right to marriage by convincing straight nuclear families that our love is just like theirs. Our sex, too: three times a month, monogamous, missionary, seven minutes, safe.

But there’s always been a tension. Queer people are a sexual and cultural vanguard. Anal sex is kind of our thing; now sitcoms joke about straight couples pegging. We had Grindr for years before Tinder popped up. We’ve been doing monogamish since basically forever.

Gay and HIV activists fought conservative institutions — public schools, the Catholic Church — to make condoms widely available and to train people how to use them. In a world where everyone was dying, condoms were the only way to stay alive. They worked. For decades, condom culture was a type of care among gay men. As we approach four years of a Trump administration, this fight against conservative institutions might be beginning anew. But condoms may have a cultural significance that now surpasses their usefulness in public health and public policy.

I bought into the politics that binds HIV and gay-marriage activism: that condoms matter, that sex must be contained, safe, respectable. I was raised Catholic and always had been a little afraid of my own sexuality. I thought myself better-than because I’d always used condoms. I looked down on my friends who didn’t. Of course humans — of all sexualities — slip up. Of course people are going to find pleasure in doing the very thing they’ve always been told not to do. Sometimes we want things from love, from sex, precisely because they aren’t safe. I wanted my ex; he wasn’t safe. I always suspected he was cheating; we had unprotected sex anyway.

The conventional narrative of the past three decades is that we survived the plague. Then we got marriage, an assimilation into an institution that I always found too narrow for most relationships, even straight ones. What we lost was the freedom of queer sex, queer sluttiness, queer rage, raw sex, queer separatism, hedonism, and free queer love, which might not look like straight love at all. HIV gave gay men who believed in respectability, modesty, and monogamy the upper hand. Marriage used that respectability to gain legal rights. Truvada might be a step toward a new sexual liberation — sex parties, singles and swingers, threesomes even for committed couples — and away from the condoms that made our sex safer not just physically but culturally. No wonder it makes people, gay and straight alike, uncomfortable.

Illustration by Paté

Truvada is nothing special, nothing new. The antiretrovirals in it have been used for decades. The difference is the bodies the drugs are put inside, now HIV-negative, no virus in residence, now not ill but pre-ill, infected only by the type of sex we have.

The pill’s out-of-pocket cost is roughly $18,000 a year. Truvada is made by only one company, Gilead. One common criticism of PrEP is that it requires HIV-negative people to take very expensive pills whose side effects are not insignificant. PrEP, the argument goes, turns gay sex into a profitable (and therefore palatable) enterprise in the age of late capitalism, where everything is moral if it’s making someone rich. Gay sex parties aren’t sinful debauchery; they’re added value for Gilead shareholders.

The rebuttal is that PrEP works. It’s most likely less expensive, and involves fewer years of dealing with side effects, than taking antiretrovirals for a lifetime, as those who are HIV-positive must. Yet $1,500 a month for the option of sex uncontaminated by fear of HIV is a high cost for an individual or society to pay.

Gilead has a program that provides free drugs to those without insurance, and there is a co-pay assistance program as well. Theoretically, anybody should be able to get Truvada at low cost. In practice, it’s not that simple.

As I was writing this essay, I had dinner with a friend who had been on Truvada but who had recently had to stop taking the drug. He hit the yearly cap — $3,600 — for the Gilead co-pay assistance program and his co-pay, he said, was as high as $500 a month. With private insurance and a very high co-pay, he was — in terms of access to Truvada — in a worse position than those who have no insurance at all.

“I just want to be able to have sex again,” my friend told me. He’s single and mostly uses online apps for sex and dates, both. He was having a hard time finding men who would have sex with condoms. For my friend, in 2016, PrEP feels necessary to have sex. He wouldn’t have unprotected sex without it, and hookup culture — according to him — has moved on. Condoms are no longer the norm. This does feel new.

I knew the city was building a program to help people with private insurance who max out the Gilead co-pay program. I had met with Dr. Demetre Daskalakis, the head of New York City’s HIV prevention campaign, to talk about condoms and PrEP and the city’s programs. We’d discussed people in my friend’s situation. I spent the next two days on the phone with a full alphabet of agencies: first 311, then HASA (only for the HIV-positive) and ADAP (doesn’t cover PrEP), then my city-associated HIV clinic. Nothing. Then state programs, PrEP-AP and the PrEP hotline; then PAN, then Xubex.

On hold listening to badly performed classical music I thought, This is how bureaucracy kills: to Bach. I’d spent months researching PrEP, and I couldn’t help my friend. Once I’d exhausted all the options, I reached back to Dr. Daskalakis, hoping for a nudge in the right direction. Yes, the city knows about the PrEP donut hole for the underinsured. Yes, they are hoping to develop a solution. No, there is nothing yet. It’s been months since my friend has taken Truvada and months, too, since he’s had sex.

Truvada offers sex without worry for fifty dollars a pill. People live and die on the basis of a brief conversation at a clinic about whether and how to sign up. Fifty percent of black MSM are HIV-positive or are likely to be in their lifetimes. New York City is majority-nonwhite. In some places people are still — against medical and epidemiological evidence — going to jail for fucking while HIV-positive. Many still blame an HIV-positive person for their risk when both partners consent to unprotected sex. Even in New York, where the city government is committed to PrEP and stigma-free HIV policy, there are people who fall through the cracks. Outside of this city, those with the least access to PrEP will be people — queer people, poor people, people of color, people in prison, people in rural towns — who have always been excluded from healthcare.

And that is what HIV care looks like before Donald Trump starts running the federal government. Our vice president–elect has led the drive to defund Planned Parenthood — even as the closure of a Planned Parenthood testing center in his home state inflamed a major HIV outbreak.

The coming years could make geography matter even more than it already does — things like PrEP may be accessible in New York and entirely unavailable in rural Indiana. More than five hundred thousand people in America know they’re HIV-positive but aren’t on treatment. This is more than half of all people living with HIV. A friend of mine has a cousin in a deep-red state dying of AIDS, right now, today. He has KS lesions, he’s unlikely to live much longer, he often can’t get drugs, and when he does take medicine he tells his relatives only that he has “cancer.” This isn’t the story we’re telling ourselves, and it’s not one we often hear.

When PrEP was introduced, we all wanted to know: Would it change behavior? Would it lead to a world where condom use dwindled and raw sex became — again — the norm? Early research showed that PrEP users didn’t decrease their condom usage. People on PrEP weren’t more likely than they were before to have raw sex, they were just more protected in their actions.

More recent studies suggest otherwise. My experience and the experience of my friends also hints at a culture shift. Almost everyone I asked who still uses condoms has a story of someone backing out of a hookup if condoms were to be used. People are having more raw sex, and they’re more open about it. They advertise it on apps. They talk about it with their friends. I see it now, and I didn’t see it much before.

I’ve spoken to dozens of people, on and off the record, about PrEP. Sitting at my kitchen table with three gay writers, none of whom were taking PrEP, I realized that all the people I’ve talked to — whether they are taking the drug or not — are making a difficult and informed choice about their body, their pleasure, their risk, their sex. Some are using PrEP as a backup to condoms, others as a substitute. Many aren’t using it at all; some use it on and off, when they are not in a monogamous relationship. Some want to start. At my kitchen table, one writer friend said that having lived through the 1990s, he’ll never take the condom off. It’ll never — for him — feel safe or sexy.

Me? When my boyfriend read an early draft of this piece, he asked if I wanted to get on PrEP. “No,” I said, “I don’t. Do you?” Reading this made him feel like HIV is inevitable, especially given the numbers concerning men of color. But this moment we’re in makes me feel hopeful. Even if HIV happens, so what? I used to think that HIV would make it harder to find love and sex. Now we know that HIV-positive and undetectable is safe. It’s sexy. I have friends who prefer to sleep with undetectable men. They know that most HIV transmission is by people who don’t know they’re infected or aren’t on treatment. For an acquaintance who prefers not to use condoms for his hookups, people who know they’re positive and are on drugs are the safest bet.

“Our story is about to change,” Dr. Daskalakis told me. He meant the public health programs the city is about to enact. For me, it’s true of our cultural moment: a disorienting pivot from everything we told ourselves to be true. The line between HIV-negative and -positive, between bodies safe and not safe to sleep with, is becoming porous.

The political moment we’re in only amplifies this feeling. We might go back to 2012 — before Truvada, before we knew that undetectable means safe. We might go back further. I can imagine a future where only people with money can treat or prevent HIV. For many, that’s still today’s reality anyway, and it probably won’t change under the Trump administration. Remember that more than half of the people with HIV aren’t on treatment right now.

So yes, we now have good HIV medicine for both treatment and prevention. Pills don’t cure us, but they might keep us alive. In 1996, people were so near to death, and then they weren’t. Pills do beautiful, beautiful things. Pills can’t do it all. Pills can’t make us better at negotiating consent or understanding risk. Pills are not healthcare infrastructure in communities that need it. Pills don’t erase stigma. Pills exist where people can afford them. Pills exist for people who can get to doctors, clinics, and hospitals.

In New York City, Truvada has become something like mainstream. All living is risky. All sex, too. I’ve slept with people I didn’t love enough when they loved me deeply. I’ve slept with people I loved who didn’t love me enough, who lied, who cheated. I’ve had joy, too, even with that ex: when we made love as midnight brought in my thirtieth birthday. Joy: the Grindr hookup I had whose body fit mine. Joy: the first kiss with my current boyfriend, a bundle of nerves, leaning forward on my couch, our glasses clinking at the nose. For decades, and still too often, these small moments of pleasure could bring death.

In the past three years, I’ve been able to imagine a new type of pleasure. Remarkably, this pleasure is one willing to inhabit my own body. I don’t know if it’s PrEP — even though I don’t take it — or the idea that being undetectable is safe, healthy. I don’t know if it’s because I have a partner I trust with my life, but I suspect it’s something more than that.

Even with boyfriends or girlfriends I trusted before, I could never have sex without feeling my life and death were at stake. Now, with my boyfriend, we strip each other naked, no Truvada in either of our blood. In these moments, my mortality is growing smaller and smaller. Sometimes I don’t think about it at all.